Marc

Yeah. So, I think it’s first, we can – I can sort of answer it in two parts first. Let’s just talk about how nonprofits intersect with the healthcare system. And so  many nonprofits fund biomedical research. There’s a lot of disease-oriented foundations – you and I worked in breast cancer. Right now, I work in the melanoma skin cancer space. But there’s Alzheimer’s groups, Parkinson’s groups, diabetes groups, so nonprofits can work in funding the fundamental biomedical research and they can also then work in the healthcare space educating the public about the key issues in healthcare. So, like when you and I were in breast cancer: get your mammogram for women at the age of 40 starting every year; in skin cancer, I encourage people to know the moles on their skin and get their skin checked to one is changing then talk to their primary care doctor or see a dermatologist.

So, nonprofits can fund basic, fundamental biomedical research at a lab. They can raise awareness about disease and encourage people to get screened and get treatment as needed. And then there’s another sector of nonprofits that actually help patients get into healthcare. So, either funding copays or procedures, or some of them providing no cost screenings – whether it’s a diabetes screening, a high blood pressure screening, breast cancer screening – so they can actually help in the healthcare delivery space [such as] helping with copays.

And then they can also help if you’re diagnosed with a disease. Non-profits play a role in sort of supporting patients that have already been diagnosed. And so, when I think about that sector, I think about food pantries and meal delivery programs and for cancer patients in different parts of the country, there are small nonprofits that even help with providing maid services while cancer patients are undergoing chemotherapy.

And so, nonprofits really can cover the whole spectrum from biomedical research to helping get treatment, to helping support you through treatment. And I think it’s critically and they (nonprofits) have a critical role in each of those spaces. And then, as it relates to health equity, when I think of the basic biomedical research side – so now where I work, we focus more on that space, although I’ve worked across all three segments: research, getting care, and then supporting a patient during care, but in the research space when we think of health equity, we look at ourselves, we look very, it’s sort of very introspective. What does our organization look like? Is the staff representative of the population? Is it diverse? Is there gender balance? We look at the staff, we look at our board of directors, and then we look at the medical advisors that we’re using and say, ‘Do we have an adequate diversity and gender, representative group advising us and serving our board and serving on our staff?’

And we went through this…we we’ve done it from time to time, but we went through this real introspection last year during the Black Lives Matter movement. And we do have shortcomings and we could improve in these areas with diversity balance and gender balance on all of our committees. And so, we’re working towards doing that. So that’s where I think it can come into play in health equity. It’s the human capital: who’s on your staff, who’s on your board? But, when it comes to the healthcare delivery, nonprofits can be critical. So again, helping patients that don’t have insurance, patients from lower income brackets that maybe can’t afford a healthcare crisis in their day-to-day financial lives. And, unfortunately, it’s disproportionate effects on people of color from minority populations, whether it’s black, Asian, or Hispanic or other non-English speaking populations as their primary language at home.

And so nonprofits have a critical role helping underserved populations, whether it’s a racial, or gender, or other underserved population, getting them into adequate and high quality healthcare. And it’s a critical gap because the government can only do so much. I feel like nonprofits have a real role in filling the gaps where government and other programs fall, fall short. And I think that’s a critical thing. Why I like the nonprofit sector is that nonprofits can, in my opinion, usually be very innovative and create new programs and test new ideas. And a lot of these are high risk and maybe they won’t pan out, but you can test new ideas to solve some of these problems.

Kelly

Really interesting. I’m curious, what types of disparities have you seen or how alarming are the disparities that you’ve seen through your career either the breast cancer space or the melanoma skin cancer space? What are we talking about when we talk about the disparities?

Marc

Yeah. I’ll answer both melanoma and breast cancer. So in melanoma, what we’ve come to realize is that even dermatologists are trained, looking at lesions and moles on very white skin. The textbooks that they use in medical school and going to get a dermatology degree, don’t adequate represent diverse skin tones from very pale to very dark. They’re primarily very white patients with a mole or a skin lesion, and that’s what dermatologists are trained on. And so that’s a disparity. We need to make sure that the textbooks represent the entire human race and entire population and doctors and dermatologists. And so there’s a fair amount of work going into refining and improving those.  Similarly, in melanoma, skin cancer is a disease of primarily of sun exposure and UV radiation changing lesions or moles on our body.

And it is predominantly a white disease because people with darker skin tones are somewhat protected from UV radiation, but they still get melanoma. They still can get sunburn and sun damage and can get melanoma, but where people with darker skins of color, they get other types of melanoma, for example, that are in some protected areas: they grow on the souls of their feet or inside their body and their mucus membranes, a subtype of melanoma called mucosal melanoma. And so, racial and ethnic groups are disproportionately affected by these rare subtypes. And there just hasn’t been enough investment to understand the biology of these rare subtypes of melanoma: what causes them, how do we understand them, how do we treat them? And so, there’s a lot of work that needs to be done there. So that’s sort of, in melanoma, it’s sort of systemic in the sense of ‘how do we train dermatologists and doctors?’ and then it’s also…there’s a disparity in the funding of research into rare subtypes, which I’m proud that my organization makes it a real priority and has invested quite heavily in these rare melanoma subtypes.

Now on the breast cancer side, it really has all those issues as well around training of physicians and things. But it really gets also into systemic racism and systemic issues. And what I mean – in breast cancer, some of my seminal work myself with many partners – so I was just one small part and both our past organizations worked in this space – what we found was in the 1980s and 1990s, there were a lot of new screening tools developed for breast cancer. We went from film-based mammography to digital mammography; breast cancer surgeries and treatments were improved and refined. But what we found is where black women and white women essentially had the same mortality rates from breast cancer in the 1980s and 1990s, between sort of 1995 and the early 2000s, like a five to less than 10 year window, what we found is the mortality rate from breast cancer in white women almost got cut in half because of all these advances in better early detection, better surgery, better oncology treatments for breast cancer and the mortality rate for breast cancer and black women was remaining the same. And it hadn’t improved nearly as much.

And so that was some of the seminal work that I was involved in and we found that it varied by city and state by state. And so, we looked at this first at the first 25 largest US cities, and then we expanded it to the 50 largest us cities and what we found…the reason we think it is primarily systemic in nature is that the disparity didn’t exist in 1995, but it did by 2002, 2003 and it got worse until like 2010. Similarly, there’s a lot of variability where some cities like New York City, there was a disparity, but it was only about 17% or 18%.  On average across the US the disparity was about 40%. And then there were some cities like Chicago and Houston, where it was much higher than 40%: 70%, 80% difference in mortality race between black women and white women. So, the disparity opening up in a short time window of 1995 to early 2000s and then this geographic variability really told us that it’s something systemic. And so, the cities and states with a lower disparity must be doing something to make sure everyone gets screened, and everyone gets treatment and high-quality treatment, and the places where there was a gap, maybe there was some sort of gap in the healthcare delivery system.

And so, I think one of the things that’s most exciting is that it’s not an insurmountable problem. I think Chicago has done the best at sort of understanding the problem and then addressing it as a city. And so, Chicago formed this citywide task force – the Metropolitan Chicago Breast Cancer Task Force. It was funded by where I worked at the time, Avon Foundation, and Susan G Komen and other nonprofits as well as the state of Illinois. And they really identified on a local level in Chicago, ‘What are the key issues?’ Is it the number of mammography centers? Is it the number of people? Is it the technicians literally putting the woman into the mammogram machine making sure that they’re all trained to high quality. So, they addressed it like from every possible facet. I’m just giving you a few examples. And then they set in place corrective-ish matters and, although the disparity was growing in Chicago from 2000 to 2010, they began to turn the corner. And now the last decade the disparity has begun to shrink. It’s still not equal, but it showed that with a lot of resources and a coordinated effort, you could impact this and that it wasn’t insurmountable.

Kelly

Do you think that’s replicable in other cities? Is there something unique about Chicago?

Marc

Yeah, so for all your listeners, it gets into key issues I hope that they’re all reading about and learning about. It gets into key issues around where populations live in a city. So poor and often minority populations live in poor neighborhoods and have less resources, less hospitals, less primary care clinics. They even have food deserts and lower access to good, healthy fruits and vegetables and food. So, it’s a systemwide problem; it’s not like any one thing. And so, it goes back to some of those core fundamental racial issues: segregation and different neighborhoods. And how do you solve those? And so, I think Chicago’s an example of what’s done well when it comes into breast cancer space; they still have a long way to go, but they’re working on it. And it is replicable in places like Los Angeles, Washington, DC, Houston, Memphis, New York City, Boston, other cities are really trying to tackle this on the same systemic level, the way that Chicago did.

Kelly

Really fascinating what you can do when you’re focused on it.  It kind of makes you scratch your head [and say] ‘Why can’t we do this elsewhere?’ But there are other impediments that we run into. At Think Tank we like to talk in impediments, so you solved some of the political impediments and the social impediments, but you maybe get into economic impediments and, I don’t know, maybe elsewhere in those cities are still social and political barriers to making those type of changes that have proved to have good outcomes if Chicago can do it.

Marc

Absolutely. And I hope that for all your listeners that what we’re talking about here is US and specific cities, but some of these same issues around access to high quality healthcare quality screening, quality treatments, it’s a global issue. And so what we see in some of the cities that I mentioned in so far in our conversation, it applies all over the world where, whether we’re talking about Central America, South America, Asia, Africa, and even parts of Europe -Eastern Europe, and other parts of the world. And so, some of the lessons that we’ve learned on a small city or town level in the US can still be applied globally. And so, I hope that any of your listeners that are interested in biomedical research and healthcare and the nonprofit world. I hope that they know they can really have a huge impact locally, state, national and international. So, I think it’s an exciting area where we can each have our own little small part of impacting the world.

Kelly

The work you’re doing right now with melanoma is on a global scale, you have global grants, correct?

Marc

Yeah. So, we fund the Melanoma Research Alliance. We fund about $10 million in new research grants every year. It’s about 40 wow new projects every year. Most of the projects run for three years in duration. So we have about 120 active projects at any one time, but we fund all over the world. So today we’re funding in 20 different countries, including in Latin America, Mexico, Brazil and all over the world. It’s exciting. And one of the things, getting more back to the laboratory side versus the healthcare delivery side. I think nonprofits, and the reason I love working where I’m at now in the Melanoma Research Alliance, is we actually help scientists think about and fund some of their earliest ideas. Again, nonprofits can really invest in early-stage ideas, innovation, let academic scientists test their latest idea that might not pan out.

So, it’s kind of high risk, but could be high reward. But the nonprofit funding allows them to test that idea, conduct some experiments in the lab, and then if it does pan out or begins to build a body of evidence, then they can go to the government, the National Institutes of Health and do larger grants, longer term grants, more funding to continue to advance the idea. And if their idea is applied in nature, meaning they’re developing a new drug or a new diagnostic device, if they’re research is more applied in nature, nonprofits can then, again, sort of formulate the idea, test the idea and then once they have enough evidence, then they can go to venture investments and big pharmaceutical companies to maybe support the development of their work. But I find nonprofits really are at that leading edge, that cutting edge of helping fund innovation, whether it’s at the lab bench or in healthcare delivery.

Kelly

Yeah. Amazing. And are you solely funding research grants or does MRA also do community grants, education, awareness funding also?

Marc

Yeah, no. Where I’m at now, we only fund medical research grants. The only part where we intersect directly with the public is helping patients find clinical trials. And that is another area of unmet need and disparity, that making sure that clinical trials enroll representative populations. It’s been a huge barrier and a huge challenge in oncology, cancer clinical trials. But what we found in what we saw just over the last 18 months when it came to COVID vaccines and new COVID treatments was those trials were to some, to a large extent, very representative. They had Hispanic, Black, white, Asian populations across the world and, and across the US; they really represented the mix of the US population when it comes to diversity and race. And the hope is maybe the oncology world can learn from what was done with COVID vaccines and COVID the treatments that were really inclusive clinical trials and how can we learn. And some of the examples of that is taking a clinical trial today, or sort of in the past, you may have had to go to the cancer center that’s in the capital, or far away from where you live. But can we take the clinical trial using like a visited nurse service, and take it to the patient – to their home or to their own local doctor’s office – so maybe they don’t have to drive that one or two hours or three hours to go to the big city cancer center to join a trial? And so that’s what COVID did. They sort of decentralized trials taking the trials to participants out in the community. And we’re hoping to learn from that and do more of that in the oncology space.

Kelly

I’m glad you mentioned that because when we talk about disparities, a lot of times we focus on the racial disparities, but disparities come in all shapes and forms and sizes. So, in that case, it’s more of a geographic disparity and maybe even socioeconomic disparity not living close in a big city to all of these amenities around care. I’m thinking like rural part parts of New Jersey, Central America (U.S.) a central part of the United States. What other disparities come up? Well, when we talk about disparities outside of racial disparities.

Marc

Yeah. So absolutely. So, there’s racial, there’s ethnic disparities, there’s gender disparities, there’s definitely socioeconomic, and then geographic are the main four that are studied. And geographic it’s a huge issue it doesn’t … it’s just not when we talk about melanoma or cancer disparity, when you think of these rural regions of the country, whether it’s in the Midwest or far outside of the big cities, they don’t have access to the best cancer centers. They might not have an expert dermatologist in their community or there’s too few of them. And so, you can’t…it’s hard to get an appointment if there’s only one local dermatologist or one local oncologist that sees cancer patients. And so there is this rural disparity as well that tracks across the United States.

Kelly

We have another amazing guest on the podcast and it was so interesting – she’s in the healthcare space now, but growing up in a very rural area of Vermont, it wasn’t until she moved in into a larger city, she didn’t know that you had a choice of primary care physicians. There was one for her town. And, and I grew up in New Jersey, you’re in New York. That concept kind of blows my mind. I’m overwhelmed with the amount of choices for primary care physicians, a dermatologist, hospital system I want to go to. But that’s a reality for a lot of people. You just get like that one service and if you’re lucky to have specialists, you’re lucky to have specialists.

Marc

Yeah. I don’t know the data as acutely on geographic disparity, but absolutely, I would venture to guess that the majority of Americans are in that situation where there is only one or two practices in their hometown. There’s not a large cancer center nearby, not a large center expert in diabetes or in cardiology or heart surgery. And that there is a disparity and many people have to drive several hours to get care at these specialty clinics or some cases fly across the country to one of the top centers, whether, again, whether it’s cardiology, cancer, diabetes, neurology. It’s a real challenge and I think it’s a solvable challenge. We still have to do more in this space. And I think again, nonprofits can play a fundamental role in all disparity types.

Kelly

Yeah. And traveling for care is a luxury. Assuming you have the money, you have the time off from work, which is not a reality for a lot of people. So, accessing care isn’t easy, right? It’s, that’s a chore if you don’t have a lot of the resources or the connections or the financial abilities to deal with a diagnosis or a chronic disease.  I’m thinking medications, specialists, access to clinics and hospitals like it’s not so simple for a lot of people in the country.

Marc

Absolutely. I mean, I agree, and most nonprofits live on really frugal budgets and most nonprofits have – the majority of nonprofits – some have endowments and things like that. But the majority of disease, specific nonprofits, whether it’s cancer, diabetes, heart disease, they do rely on generous donors donations from the public. And so, because most nonprofits need donations from the public I encourage your listeners – there’s no donation, that’s too small. I always tell everyone, ‘$5 can make a difference’. If enough of you got together and sent $5 or $10 to a nonprofit, it can really make a difference and they can do really good things with that money and really make an impact on disparities and improving healthcare for all of us.

Kelly

Yeah. I mean, a dime makes a difference, right? The March of Dimes…donations of dimes basically cured polio. It’s incredible. 

Marc

Absolutely. And you know, the US – Americans in general – are such a generous society compared to other countries around the world. So, Americans are very generous. They donate a lot, you see it whether it’s routinely to, to cancer groups or other groups, but they also come together when they’re as a crisis – like after a hurricane or a tornado hits and you’ll see lots of donations, both cash, sweat, tears.  That the other aspect I think we haven’t touched on is it’s not all about funding donations; almost all nonprofits can utilize volunteers. You can help in various ways: most nonprofits – for any of your young listeners as they go into college – most nonprofits have internship opportunities. They can be a real nice place to learn more about the world. And the way I look at nonprofits is they’re corporations, but instead of trying to earn a profit, because they’re a nonprofit, their motive is to improve society. All of your listeners can be part of that. If they want to intern at a nonprofit, join a nonprofit, maybe in the future go work for a nonprofit, it’s a really rewarding career path.

Kelly

Yeah, absolutely. I concur. Thank you again – cheerleaders for the nonprofit sector. As a grant maker across different sectors – melanoma, breast cancer, with JDRF at one point as well – where do you see the greatest need for funding? And this may be a very loaded question and it’s industry specific. But is it research? Is it community programs? And I guess a follow up to that question, where do you fight the disparities best? Is it in a lab? Is it outside? Is it all of the above?

Marc

Yeah, I would have to say all above and that people should donate either whether it’s their financial donation or their sweat equity and volunteering and rolling up their sleeves and helping, they should get involved at any or all of those to help address these problems. I do believe investing in fundamental research in the lab is critical to making new advances.  When I think of dermatology, there’s a huge issue of not enough expert trained dermatologists as we discussed around the country. And I think investing in research, potentially like artificial intelligence and we all have smart cell phones now today – most people do – there is artificial intelligence and apps and things like that that could help in dermatology diagnoses and make it more democratic and equitable for people to access experts, whether it’s via video or on their phone.

It’s not solved yet today, but there’s a lot of research going into AI applications in dermatology. So that’s just one example of where I think investing in fundamental research in the lab or in the ice world could really help eliminate some of these disparities and barriers. But then also investing in healthcare delivery is critical as well. Before 2014, before the affordable care act, there were millions and millions and tens of millions of people without health insurance and the nonprofits then were so critical, I mean, every dollar donated could lead to a woman getting a mammogram and/or getting treatment for her cancer. You know now with the Affordable Care Act, some of those gaps that existed before have been plugged, but there’s still a lot of gaps and people’s ability to access healthcare to pay those copays, as you already mentioned  to try to a doctor if you have to  take a taxi or an Uber or spend the night in a hotel because your treatment is over two days, there’s still a lot of financial barriers beyond just health insurance and nonprofits really play a critical role there.

And then the last part of out there in the community, and I personally have volunteered for many years at a food organization literally cutting vegetables and helping prepare meals for delivery for people that otherwise couldn’t have a hot meal at home. And so I think there’s a lot of role there for people to volunteer and be involved in food programs and other community programs, whether it’s food or clothing drive or other ways to help. And I think all of them are important to address disparities. And I would say, just start, for any of your listeners, start at one that resonates with you. If you really want to be hands on and shopping vegetables and stock the food pantry, do that. If you’re more interested in biomedicine and biomedical research, pursue that path. And so I think it takes all the different sectors of the nonprofit to work together.

Kelly

And one thing we didn’t really get too deep into is the advocacy arm of nonprofits and what they’re doing in terms of intersecting with the government and bringing up these issues; pushing for legislation that addresses a lot of these disparities or needs for research. Is that part of your wheelhouse as the Chief Scientific Officer at MRA or as a Chief Mission Officer at BCRF? Were you engaged in those types of advocacy efforts?

Marc

Yeah, absolutely. So political advocacy is critical. To put it in perspective, if we look at biomedical research funding, of a hundred percent pie of biomedical research funding, only 4% is provided by nonprofits; probably about 45% by NIH and the government; and then 50% of R&D budgets are from pharmaceutical investment. And so nonprofits, although they really can have a huge impact, it’s a small portion of the bigger pie when it comes to healthcare and addressing disparities. And so political advocacy – advocating that Congress cover a medical treatment or medical procedure is critical. Advocating that Congress invest more government money into research is critical. And again, because the nonprofits are such a small but critical portion, but if you’re going to leverage that and grow that to tangible things that can help society, you’re going to need government and other private sector investments.

Kelly

Yeah, absolutely. I remember at Komen we were focused outside of research, at least in New Jersey, but on prescription costs and the high costs of prescription medicine and the impact that that has on individuals who need lifesaving medicine that costs hundreds or thousands of dollars a month. That’s just not attainable for the average person, yet you need it to live – which is not a choice anybody should make.

Marc

Yeah, no, absolutely. I personally view healthcare as a human right. And it should be made available to everyone and, absolutely, advocacy to Congress and to the government to cover these expensive medications, to make sure people can access them is totally a necessary thing to make sure there’s equitable distribution of all the amazing health discoveries and advances that we’ve made in the last few decades.

Kelly

Yeah. You’ve been on the scientific side, the nonprofit side, helping patients, but you share that you’ve had to advocate for yourself as a patient as well when you received your diagnosis of advanced lymphoma. I would love to hear what that experience is – being on the patient side. But first, most importantly, how are you feeling? How are you doing? How is your health?

Marc

Well, thanks for checking.  I’m doing really well. I finished six months of treatment for my lymphoma. And so far it looks like I’ve had a complete response and my amazing cancer is in remission. So..

Kelly

AmazingI

Marc

…thank you, thank you. But, yeah, it was quite a journey. At the end of 2020, I was having some symptoms. And then earlier in this year at the beginning of 2021, I was diagnosed with advanced, stage-four lymphoma. And I went from being the scientist and advocate, helping patients like what I’ve done for the last 20 years, to being a patient myself. And I think for all people, whether it’s yourself or your parents, or a loved one, a grandparent – the key is to just be your best own advocate. You have your own best interest at heart and so for me, what that meant was going online and finding credible resources. You need to find credible resources, don’t just Google,

Kelly

Sorry, Wikipedia? You didn’t get all your good scientific medicine from medical information from there?

Marc

Yeah. But find a credible source of information. The best place to look, that I find, is nonprofit organizations that work in space. And so, for me, I look at the Lymphoma Research Foundation and the Leukemia and Lymphoma Society. And I encourage all of your listeners: find the incredible nonprofit working the space, whether it’s Susan G. Komen or the Breast Cancer Research Foundation or the Alzheimer’s Association, find the one that’s working in your disease space. There’s a lot of them, almost every disease is covered, not all, but the majority of them are, so find credible information. And that’s what I did. Get yourself to experts. And so, you want to find a doctor. If you don’t live in a big city – I live in New York City [are] there’s five large cancer centers so I’m very lucky – but if you don’t live in a big city, like me, find the local university that has a medical school.

And so, where I went to school, University of Kansas, has a great medical school in Kansas City. University of Colorado has a great medical school in Denver. So, if you don’t have a big cancer center like in New York, or San Francisco, or LA find a local university affiliated medical school and find doctors that work on your disease at that local university medical center. It’s really critical to find an expert that sees a lot of your cases. And again, you don’t necessarily have to travel to one of the big coastal cities or Chicago or Houston or Dallas, just find one as nearest by, as you can. For me I did get a second opinion. So, I saw two different doctors at two different high hospitals here in New York and went to both and got their guidance and advice on how they would approach treating my lymphoma. And ultimately, I picked the one that I thought aligned most with what I wanted.

So, get educated, find credible medical centers, if possible a university academic affiliated center nearby you, and then get more than one opinion if you have the time. Some diseases like a heart attack, you need to treat right away, you don’t get a choice. But some cancers you can take a week or two and get more than one opinion. And it’s important to do that. You know, in my case, lymphoma is a really long-occurring cancer. I’ll be battling this the next 50 years, hopefully.  So, you want to make sure you find a doctor that you have a good relationship with and pick one that you get along with and you understand – they talk at a level that you understand and you feel that they’re hearing your concerns and listening to your concerns and your issues. And, just like every human-to-human relationship you have to find one that works for you. And so if you can, get to an academic medical center, get more than one opinion and then when you start treatment, pick a doctor that you get along with, one that you want to work with.

Kelly

Awesome advice and I think another good plug for nonprofits, right? They are credible organizations. A lot of them have longstanding, very highly regarded reputations where if you don’t know where to turn when you hear the words ‘you have cancer’ or any other disease that kind of turns your life upside down, that’s a great place to start. Because not only do they have medical officers that are informing their research, the information that they’re putting out, they have connections to community centers who can help with patient care costs, travel costs, who can educate you on this disease: what is it, what do you need to do, what are the things you need to think about. what should you talk to your doctor about? I’ve not known nonprofits to recommend doctors, but I think certainly you can see which partnerships they have, which doctors have spoken at events.

They just sort of give you a pathway to just start asking questions, to start trying to identify who the people are that you need to bring onto your team to treat you. And that’s a great, I think, a great way to start. I’m not saying that just cause I’ve been a nonprofit for so long, but, I mean, any disease that I’ve run up against in terms of family or friends or anyone needing guidance or advice I’ve usually found they [nonprofits] were a good first place to start sort one stop shop for anything you need to know about Parkinson’s, Alzheimer’s, skin cancer, MS, etc, that’s a good resource. Or maybe hospital sites, clinical sites can be kind of overwhelming in my opinion.

Marc

Yeah, no, absolutely. Nonprofits are a great resource for anyone diagnosed with a life-threatening disease. Nonprofits usually have really good, credible information. So, they have pamphlets and content on their website usually blogs about the latest research advances that might be of interest to you, and then as well you can contact nonprofits for support. If they don’t provide support services themselves, they’ll connect you to local groups that might. You can look to nonprofits to find medical experts. Look at who’s on their medical advisory board, their scientific advisory board.  And when it comes to rare diseases some, some nonprofits do credential, specific centers. I think of the Cystic Fibrosis Foundation – they have sort of centers of excellence and those are places that they encourage patients with CF to go to.

Kelly

Really true. So, looking forward, where do you think we can continue making advancements in terms of access to care, health equity particularly in the nonprofit space? And if you can share any of the amazing research that Melanoma Research Alliance is doing, I’d love to hear it, but maybe that’s classified.

Marc

No, so I think nonprofits continue to have a critical role advancing research on new inventions, new treatments that are maybe more effective, less toxic and then getting those out to the population I think nonprofits have a critical role still on the healthcare delivery side, like we’ve talked about, and making sure people are covered. Again, the Affordable Care Act helped a lot of people get insurance, but there’s still lots of gaps and barriers that people face. And so, there’s lots of work nonprofits can do there. And then in supporting people as they go through these journeys – making sure people have adequate food sources, have the support that they need – social support, psychosocial support. I think it’s critical for all of those things to continue and nonprofits have a critical role. As far as the Melanoma Research Alliance again, I’d say where we’re funding research that could really touch on helping eliminate some disparities in healthcare are 1) on detecting melanoma, again, getting back to artificial intelligence and are there ways that  cameras and smartphones and tools that we can use, because there is a shortage of trained dermatologists in all throughout the country and all throughout the world – so is there a way we can help that with technology. And there’s several projects; we’re funding about a half dozen using AI and imaging and cameras. It’s still a work in progress, but hopefully in a few years from now, we’ll have a validated app or other tool that you can use to work with a dermatologist, even if you don’t go to their office directly. The other area that we’re funding, as I mentioned briefly earlier, is melanoma that occurs in people with darker skin tones; these rare melanoma subtypes: one called acral melanoma occurs on the palms of your hand or the souls of your feet or under your fingernails.

And then one called the mucosal melanoma, which occurs on your mucus membranes. And then another really rare one that occurs, it’s a melanoma that occurs in your eye called uveal melanoma. And it’s often caught by eye doctors or eye surgeons. So these rare subtypes can disproportionately affect people of all skin tones, white to medium, brown skin tone to really dark, black individuals. And so MRA’s funding a lot of research into these rare melanomas. We don’t know that much about them so we’re trying to understand what are the risk factors, because it doesn’t appear to be sunburn and UV radiation. So, what are the risk factors? What’s the biology of these rare melanomas? If we understand the biology and how they grow and progress, maybe then we can identify new treatments that might specifically benefit some of these rare melanoma patients. They don’t, unfortunately they don’t respond to all the current treatments that we have for melanoma. So that’s where we’re working on:  improving detection and improving understanding, and then treatment options for these rare melanoma subtypes.

Kelly

Do you find that for some of these rare diseases, are they being picked up by the government or by pharmaceutical companies – you said, are doing the lion share of the research pie? Or is it really up to nonprofits to push for research in these specific areas or funded themselves?

Marc

Yeah, I would say five years ago or more the government and pharmaceutical companies weren’t investing as much into rare diseases. I think the tide is turning. So, nonprofits really are again, funding that leading edge, that cutting edge, but more and more, I think the government and NIH and pharmaceutical companies are beginning to invest in rare diseases. But there’s still a huge role for nonprofits to play there.

Kelly

Yeah, absolutely. All so fascinating. and as someone who’s not very scientifically minded, you’ve made science fun this morning, so thank you. You’re doing amazing work. Where can our listeners and our students keep up with you?

Marc

Yeah. So, I would go to the MRA website, we’re at www.curemelanoma.org. You can find me on Twitter, it’s @drmarc15 on Twitter. And I really look forward to hopefully meeting some of your listeners in the future.

Kelly

Yeah, absolutely. Marc, thank you so much for sharing an incredible personal story and so glad that your prognosis is so positive and uplifting.  And we will certainly keep you in our thoughts and for lots of good health and healing in the future. And thank you for sharing great professional insights over a really impressive career in the work you’re doing and the organizations you’re leading; the impact they’re having on the community, it’s tremendous. So, thank you for sharing that with us and giving us more of a glimpse into the world of nonprofit and how it intersects with healthcare and our fight for health equity.

Marc

That’s great. Thank you so much for having me really enjoy being with you today.